My platelet count has increased after a year on Hydroxyurea (HU)

Posted by mikemp @mikemp, Apr 6 7:31am

I have been taking HU (1000mg per day) for one year for essential Thrombocytosis . I have experienced little side effects and my platelet count have steadily gone down.
My latest blood tests showed an increase for the first time since I started HU. It went from 360 to 420.

Has anyone experienced fluctuations in their platelet count. Is it normal?

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I'm 70, ET-CALR x 17 years, HU x 6 years. My platelets run up and down in 400s with occasional spikes over 500. Hemo considers that "very stable." Bet your levels will go down again next test. My guess is that you'd have to show at least three consecutive tests over 450 before docs felt meds needed adjustment. Like Ginger said, they're looking at trends, not one-time spikes. To be honest, with your numbers I'd be asking the doc if I could reduce my HU by 500 mg a few days per week.

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@nohrt4me

I'm 70, ET-CALR x 17 years, HU x 6 years. My platelets run up and down in 400s with occasional spikes over 500. Hemo considers that "very stable." Bet your levels will go down again next test. My guess is that you'd have to show at least three consecutive tests over 450 before docs felt meds needed adjustment. Like Ginger said, they're looking at trends, not one-time spikes. To be honest, with your numbers I'd be asking the doc if I could reduce my HU by 500 mg a few days per week.

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Thank you. Your comment is much appreciated.

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@dale1k

I’ve been on HU for PV since 2021.. My platelets have dropped and been flagged as low (120 or below) for the past 2 years.. I’ve been as low as 91 which seems concerning but this is not an issue according to my hematologist/oncologist and I actually have felt great thru this to date… I exercise daily; ride the bike weather permitting and swim at a recreational center every day.. HU seems to impact people differently when it comes to side effects and test results..

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One year for me on HU. Platelets were in a steady decline but my last blood test showed an increase. I was just a bit concerned.
All the replies helped to ease my fears.

All the best to you!

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Just had my labs this morning. My platelet count was 421. Doc says not to worry as all other blood parameters are normal. I’m on 500 mg of HU 4 times a week for over seven months. My platelet count at the beginning of this adventure (ET due to JAK-2) was as high as 950. It’s been bouncing around for the past 4 months. Most labs have a top end of 450 for the platelet count. My
Internist’s lab has a high end of 400. Baby aspirin (81mg) daily is a protective must. My total protein count has been rising to where it’s slightly out of range. Again, doc says not to worry as he’s done more in-depth protein tests that have ruled out Multiple Myeloma. The time to panic is when there’s a dramatic increase or decrease in blood values.
Stay the course my friend and don’t be too concerned about periodic fluctuations.

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Boy I wish my PLT count was below 400, which for over 5 years it has not even been close even with taking HU for PV, now 1000mg a day for over a year and 500mg starting 2.5 years ago. It fluctuates but at least no discernible side effects.

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@robinll

Boy I wish my PLT count was below 400, which for over 5 years it has not even been close even with taking HU for PV, now 1000mg a day for over a year and 500mg starting 2.5 years ago. It fluctuates but at least no discernible side effects.

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One year ago, mine was close to 900. With 1000 mg a day it gradually went down to 380. Never went up until last week when it went to 440. Surprised me as I was not aware of those fluctuations. This forum has helped me to not worry too much.
I would like if my hematologist would agree to cut my HU to 500 mg a day but he does not recommend it for now.

All the best to you! Thanks for your reply.

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How frequently are you getting blood tests? I get one every month ( forPV) and my doctor doesn’t get too excited about a single month change. I would suggest following for any trend, like over a course of several months.

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@beebo

How frequently are you getting blood tests? I get one every month ( forPV) and my doctor doesn’t get too excited about a single month change. I would suggest following for any trend, like over a course of several months.

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Tests every two months.

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What is HU (1000 mg/Day)? My Platelets Count has been steadily dropping by few points and is at 120 now from 165 earlier (few years back). I had been monitoring the Iron, Hemoglobin and Platelet regularly which always changed by few points.

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Hydroxy Urea medication at 1000 mg a day.

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